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In the short, turbulent history of AIDS research and treatment, the boundaries between scientist insiders and lay outsiders have been crisscrossed to a degree never before seen in medical history. Steven Epstein's astute and readable investigation focuses on the critical question of "how certainty is constructed or deconstructed," leading us through the views of medical researchers, activists, policy makers, and others to discover how knowledge about AIDS emerges out of what he calls "credibility struggles."
Epstein shows the extent to which AIDS research has been a social and political phenomenon and how the AIDS movement has transformed biomedical research practices through its capacity to garner credibility by novel strategies. Epstein finds that nonscientist AIDS activists have gained enough of a voice in the scientific world to shape NIH–sponsored research to a remarkable extent. Because of the blurring of roles and responsibilities, the production of biomedical knowledge about AIDS does not, he says, follow the pathways common to science; indeed, AIDS research can only be understood as a field that is unusually broad, public, and contested. He concludes by analyzing recent moves to democratize biomedicine, arguing that although AIDS activists have set the stage for new challenges to scientific authority, all social movements that seek to democratize expertise face unusual difficulties.
Avoiding polemics and accusations, Epstein provides a benchmark account of the AIDS epidemic to date, one that will be as useful to activists, policy makers, and general readers as to sociologists, physicians, and scientists.
Epstein shows the extent to which AIDS research has been a social and political phenomenon and how the AIDS movement has transformed biomedical research practices through its capacity to garner credibility by novel strategies. Epstein finds that nonscientist AIDS activists have gained enough of a voice in the scientific world to shape NIH–sponsored research to a remarkable extent. Because of the blurring of roles and responsibilities, the production of biomedical knowledge about AIDS does not, he says, follow the pathways common to science; indeed, AIDS research can only be understood as a field that is unusually broad, public, and contested. He concludes by analyzing recent moves to democratize biomedicine, arguing that although AIDS activists have set the stage for new challenges to scientific authority, all social movements that seek to democratize expertise face unusual difficulties.
Avoiding polemics and accusations, Epstein provides a benchmark account of the AIDS epidemic to date, one that will be as useful to activists, policy makers, and general readers as to sociologists, physicians, and scientists.
Price: $33.95
Pages: 480
Publisher: University of California Press
Imprint: University of California Press
Series: Medicine and Society
Publication Date:
15 September 1998
Trim Size: 9.00 X 6.00 in
ISBN: 9780520214453
Format: Paperback
"As the AIDS movement is showing, people with diseases can play a profound part in saving themselves . . . A perceptive and useful analysis of this revolution in the democratization of medicine."
Steven Epstein is Assistant Professor of Sociology at the University of California, San Diego. The work on which this book is based won the American Sociological Association's award for best dissertation of the year.
ACKNOWLEDGMENTS
Introduction: Controversy, Credibility, and the Public Character of AIDS Research
The Crisis of Credibility and the Rise of the AIDS Movement
Analyzing AIDS Controversies
The Plan of the Book
Conceptualizing AIDS: Some Intellectual Debts
PART ONE: THE POLITICS OF
CAUSATION
1. The Nature of a New Threat
The Discovery of a "Gay Disease" (1981-1982)
Lifestyle vs. Virus (1982-1983)
The Triumph of Retrovirology (1982-1984)
2. HIV and the Consolidation of Certainty
The Construction of Scientific Proof (1984-1986)
HIV as "Obligatory Passage Point"
3. Reopening the Causation Controversy
From Deafening Silence to the Pages of Science (1987-1988)
Consolidation and Refinement (1989-1991)
4. The Debate That Wouldn't Die
The Controversy Reignites (1991-1992.)
The Dynamics of Closure: Whither the Controversy? (1992-1995)
Causation and Credibility
PART TWO: THE POLITICS OF TREATMENT
5. Points of Departure
Targeting a Retrovirus (1984-1986)
Clinical Trials Take Center Stage (1986-1987)
6. "Drugs into Bodies"
Gaining Access (1987-1988)
A Knowledge-Empowered Movement
7. The Critique of Pure Science
AZT and the Politics of Interpretation (1989-1990)
Activism and the Manufacture of Knowledge (1989-1991)
8. Dilemmas and Divisions in Science and Politics
Combination Therapy and the "Surrogate Markers" Debate (1989-1992.)
Inside and Outside the System
9. Clinical Trials and Tribulations
The Search for New Directions (199z-1993)
Living with Uncertainty (1993-1995)
Conclusion: Credible Knowledge, Hierarchies of
Expertise, and the Politics of Participation in
Biomedicine
Science and the Struggle for Credibility
The Transformation of AIDS Research
The Legacy of AIDS Activism
METHODOLOGICAL APPENDIX
NOTES
INDEX
Introduction: Controversy, Credibility, and the Public Character of AIDS Research
The Crisis of Credibility and the Rise of the AIDS Movement
Analyzing AIDS Controversies
The Plan of the Book
Conceptualizing AIDS: Some Intellectual Debts
PART ONE: THE POLITICS OF
CAUSATION
1. The Nature of a New Threat
The Discovery of a "Gay Disease" (1981-1982)
Lifestyle vs. Virus (1982-1983)
The Triumph of Retrovirology (1982-1984)
2. HIV and the Consolidation of Certainty
The Construction of Scientific Proof (1984-1986)
HIV as "Obligatory Passage Point"
3. Reopening the Causation Controversy
From Deafening Silence to the Pages of Science (1987-1988)
Consolidation and Refinement (1989-1991)
4. The Debate That Wouldn't Die
The Controversy Reignites (1991-1992.)
The Dynamics of Closure: Whither the Controversy? (1992-1995)
Causation and Credibility
PART TWO: THE POLITICS OF TREATMENT
5. Points of Departure
Targeting a Retrovirus (1984-1986)
Clinical Trials Take Center Stage (1986-1987)
6. "Drugs into Bodies"
Gaining Access (1987-1988)
A Knowledge-Empowered Movement
7. The Critique of Pure Science
AZT and the Politics of Interpretation (1989-1990)
Activism and the Manufacture of Knowledge (1989-1991)
8. Dilemmas and Divisions in Science and Politics
Combination Therapy and the "Surrogate Markers" Debate (1989-1992.)
Inside and Outside the System
9. Clinical Trials and Tribulations
The Search for New Directions (199z-1993)
Living with Uncertainty (1993-1995)
Conclusion: Credible Knowledge, Hierarchies of
Expertise, and the Politics of Participation in
Biomedicine
Science and the Struggle for Credibility
The Transformation of AIDS Research
The Legacy of AIDS Activism
METHODOLOGICAL APPENDIX
NOTES
INDEX